Well friends and family, today is April 9th, and I finally made it to my 6 month mark, HOORAY! At this stage who knows, this could mean I'm half way through my recovery based on my surgeons opinion, or a quarter of the way based on other's experiences with decompression nerve surgery and the opinions of the United States specialists. Either way, it is a mile stone worth celebrating, and the way I look at this is there is still plenty of time for many opportunities of improvement over the next few month's. I'll just remind you that nerves really do take a long time to recover and heal, and even though 6 month's ago I envisioned my six month mark so differently, I am very thankful for the progress that has been made.
I knew when I decided to travel to Turkey for my surgery that there were no guarantees. I also knew this surgery would not cure me of PNE, because as of now there is no cure for this rare nerve condition. But, what I did know was that this particular surgery's success rate was between 60%-85%, and that a 50% improvement in pain reduction was considered a successful surgery. After 20 month of living with excruciating and debilitating pain I new this was my only chance of regaining some type of normalcy. And, even though I knew PNE would more than likely affect me for the rest of my life in one way or another, the thought of having a 50% or more reduction in pain filled my heart with happiness and restored lost hope.
Looking back over the last 6 month's of my recovery, I can honestly say that physically I've had my fair shares of up and downs, but emotionally and spiritually, I've amazingly managed to stay strong and this has been a true blessing during this long and very slow recovery process. It's not easy to see the progress that has been made from day to day, but compared to this time last year, and even compared to the first couple of month's post surgery, I can see and feel the differences.
Today this is where I am in my recovery, my pain levels have significantly come down, most days I hang out in the 4-5 range, sometimes it can creep up to a 7, but not very often, and even better, I've had days where it goes as low as a 3, and I've even experienced a 2 a time or two also! It's been a long time since I've depended on the use of ice, and lately, more days than none I can go my whole day without needing to lay down to relieve the pressure and pain. Keeping the pain levels down is half the battle, so this is a HUGE accomplishment so far. Sitting is still an issue, although, since surgery I can now sit flat rather than tipping up on my hips, which has been a nice improvement. Socially, standing up in a sit down kind of a world is not my idea of fun. I'm limited to 30-60 minutes of sitting and then I'm done, the amount of time really depends on what kind of day I'm having, and what type of seating is available to sit on. My everyday challenges are vacuuming, mopping floors, and grocery shopping. Vacuuming was my favorite chore before PNE, now it's become a difficult task, some days I can get through a couple of rooms, but most days I rarely finish the room I started in. Mopping is impossible, now my kids argue over who's turn it is, and I feel my floors are only as clean as their ability, or willingness to do so. And the shopping, this is no easy task, we are a family of 7 so rarely is a trip to the store for just an item or two, it's always a full basket, and pushing a heavy basket around is really difficult and creates a lot of pain, not to mention the loading and unloading of the cart and the car...extremely exhausting all around! I usually have to bring one of my older children along or I wait until the weekend when my husband can tag along to help. The good news is that when my pain increases due to my activity, it's not long before it settles down. Before surgery once my pain hit high levels it would stick around for the rest of the day, even if I layed down, and sometimes depending on how much I over did it, I found myself dealing with a two or three day flare, but...not anymore! I love that my bad days are more like what my few and far between good days were before surgery, and that is progress worth celebrating.
The most exciting news is...I find myself entertaining new ideas, the main one is the possibility of going to a movie with my family, and even better, just my hubby. I have only been to the movies twice since PNE found it's way into my life, the first time I literally squirmed myself out of my seat because it hurt THAT bad, and watched the movie kneeling on the nasty theater floor...eww! The second time I stood up in the back, and our two year old thought this was the greatest thing ever, he spent his time running up and down the isle between me and my husband...very annoying! With these two attempts of going to the movies I realized that it was not worth my time, it's hard to enjoy a movie while kneeling on your knees or standing in the back all by yourself. I had come to terms with the fact that going to see a movie at the theater was something I would never do again, but now this milestone is seeming more and more obtainable as I improve. All the things that once seemed lost, feels like they're in such close reach, that I'm even more determined to totally kick some PNE butt!
I thought I'd used this post to answer some of the most commonly asked questions since returning home from my journey to Turkey for laparoscopic pudendal nerve decompression surgery. Are you ready? Let's get started!
Do I regret going to Turkey?
This is my most frequently asked question, and my answer is...ABSOLUTELY NOT! If you only knew how many doors this experience has opened for me, then you would understand why I have no regrets. (this is a post all of it's own)
How am I doing, am I better, did it work?
I think this post sums up a lot of these question, but if you're looking for a number, I'd say I've seen about a 25% improvement at this stage in recovery...YAY!
Do I take medication for the pain?
Nope, not anymore. I had terrible side effects on the medications suggested for reducing nerve pain, I have been off all my meds since last June. On occasion I use a valium/baclofen suppository after an intense PT session, but I think I've only used three in the last 4 months that I've been doing PT.
How's my back?
Ha ha...Love this one! Ummm, it's not my back.
Do I stay in contact with the surgeon fromTurkey?
Not so much anymore, he is one of my FB friends, and if I needed anything I'm sure he'd help in any way. He's just that good!
How's my foot and leg?
My motor function is 100% improved. I still have sensation issues with some numbness on the top of my foot, but overall the sensory issue is 90%-95% improved.
What are the things I'll never do again?
This is a loaded question, because really anything is possible. But, even if I make a full recovery and it may seem like I can do anything, there are some sure things that I should avoid as to not re-injure this nerve.
Riding a bike or anything that requires straddling, horse back riding, snow mobiling, wave running, and so on. It's possible that I would not have the opportunity to work full time at a sit down job, this may or may not be too difficult. You see, I guess time will tell, and I really don't know the answer to this question quite yet.
What I do know is that there are worse things I could be dealing with, I feel blessed that this is not a life threatening disease, I do have a choice to live, where some people don't even have that option and are literally fighting for their life everyday to stay alive. I feel blessed that I have the freedom to get up and walk, it might be hard and I may be slow at it now, but if given the choice of never to walk again or never to sit again...I'd definitely take no sitting for sure. I also feel blessed to have such amazing family and friends and for their amazing support during this trying time. I'm in a very good place and I'm still hopeful that good things are to come with some more patience.
Thanks to everyone that has followed along during this journey, for your kind words of encouragement and endless support, it really does mean so much!
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